To be on Ibranceor not? I moved from CA to PA and last Nov. had a pet scan and it was cancer free, clear. I was on Ibrance and letrozole for two years as my cancer came back in left lymph nodes again. I had estrogen type cancer in left breast in 2009 and had a double mastectomy and chemo. Then for 5 years was on Letrozole. Then 3 years later it came back.
My oncologist back in CA put me on Ibrance after surgery and radiation - Ibrance 2018 started it. My pet scans are cancer free and my oncologist told me to stay on Ibrance as it is working.
My new oncologist told me that I should just stay on letrozole and go off Ibrance as I’m healthy. She is getting another opinion from the Mayo Clinic.
Has anyone else experienced this?
Best to you all.
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sujata2
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I understand your dilemma, but what a wonderful post to read! Congratulations on being cancer free. You're the first one I heard of where the Ibrance/Letro combo killed all metastisized cancer.
As to your dilemma, if Ibrance has been tolerated well by you, I probably would continue taking it at the lowest dose. Please do share the results of your onc's consult with the Mayo Clinic and your decision.
I was diagnosed with stage 4 mestatic breast cancer 1 year ago. My Oncologist put me on ibrance and Letrozole. After 10 months, my Pet Scan results show no more cancer cells at all. My Body is all clear.
4 Things I do which I am absolutely positive are crucial in getting rid of cancer for good!
1) Be a complete vegetarian - no more meat ; meat contains too much bacteria/virus.
My diet consists of Brown Rice, Tofu, Lots of green veggies, sweet potato, spaghetti , pasta, avocado
There are plant-based hamburger patties you can buy Beyond Meat, Impossible meat
2) Be Compassionate - always show gratitude, say kind,encouraging words to others.
Do Volunteer work, give bk to your community when you have the energy to do so.
Thank you for your response to this old post. I've been on a whole food plant based diet since 2018. No sugar, no oil, no vegetarian junk food either. I don't eat anything processed. I do rebounding 20 minutes/day and walk with a friend. I volunteer at art galleries and our local musea (of course there was a break due to Covid-19). Plus I teach English to immigrants.I don't eat rice, only black wild rice on occasion to avoid the arsenic in rice (maybe check into it). It's much tastier anyway.
Ibrance/Letrozole worked for me for about 18 months, then failed. I now am on Capecitabine and after finding the right dosage and schedule I feel great and am stable. I take every day as it comes and enjoy the life God gives me.
I hope and pray you'll have continued success on Ibrance
Thank you! I will let everyone know after my pet scan in July.
Yes, I have been a vegetarian since age 14 and four years ago stopped eating diary . I’m 64 years old now. I bike, walk and hike.
I also fast 15 hours just black coffee in morning. Drink plenty of water. Then about 3:30 I take my protein keto shake with all my vitamins. Then eat a veggie meal.
🙏🏻💜🧚🏾♀️
I really think nutrition matters in beating cancer. Diary has so much hormones and eating diary and meat causes inflammation.
Yes, I don't eat cheese or drink milk either. Instead I drink soy milk or almond milk.Wow, you started being a vegetarian when you're so young, good for you! I switched to a vegetarian diet when I was about 30.
Thank you for sharing. I think you're an incredibly vibrant and positive person!
Are you a seventh day Adventist? Reason I ask is I and vegetarian since age 14 when I went to academy. The mets in my bones healed. I also had wuit sugar after my first cancer
Hi Sujata2,
It's so interesting, what you're saying/your docs are suggesting. I'd be inclined to do what they say, which is not typical for me, as you're unusual in that your mets are / seem to be (?) to your lymph nodes only?
When I had that situation, at initial dx, they classified it as stage IIb or IIIa, not IV...At the time, they did not consider my cancer to be metastatic and just put me on something (tomaxafin?) thinking it might not even become metastatic.
If I'm misunderstanding the extent of your cancer, I'll note that Ibrance essentially doubles the length of "progression free survival" of whatever it's paired with, e.g. Letrozole.
But I think I've read about studies re: using Ibrance to forestall metastatic progression? Maybe that's what your CA docs were doing?
Maybe contact your former doc in CA to understand what their reasoning was and then make up your own mind based on what the two different points of view are?
Good luck with it! I'll note that, as counter-intuitive as this might sound., you're in a pretty enviable position...
Take care, and it'd be wonderful if you filled us in on what you learn...
ThAnk you Lynn . Yes I will hear from them probably the end of next week. My fear is it may come back in 5 years ? But she wants me to stay on Lestrole for 10 years instead of 5.
Yes, Hi Lynn ... still off Ibrance. I did let my CA oncologist know what the Mayo Clinic said that to go off Ibrance and stay on Letrozole for 10 years.
I feel healthy and doing great. I have a pet scan in July 2021. We will see.
Yes, my oncologist wondered if I did have metastatic breast cancer as it returned to my left side under arm, lymph nodes. It did not spread anywhere else.
What a great position to be in. I would probably want a third opinion that I got on my own. Wonder why oncologist is wanting to take you off something that is working. Read both oncologist resumes and reviews. At any rate, you have some easy choices as far as treatment choices. Good luck. Blessings, Hannah
I am on Ibrance and letrozole and tumors disappeared . My onc has not said to stop it but please let us know what the Mayo Clinic says-it’s working so well I’m afraid to stop but I’ve only had it since August 2018. Good luck -we are here for you,🙏❤️
Hi, yes in July I will have another pet scan. We will see. Feeling good . 🙏🏻💜
Fantastic news. Sorry I can’t really help here, but it’s good there is a second opinion coming. The more input the better for you to make an informed choice. Go with what yo7 feel happiest doing.
That is good news as I am on Letrozole and Palbociclib too. I am having more scans at the end of this month. I hope I am improving. I actually feel quite good except I am losing some hair and not happy about that as I have always had rather thin hair. But I am actually quite grateful to be doing as well as I am. I was diagnosed May 2018. So this May was one year on this combo of drugs. I am so happy for you and hope you stay well. Take care. Hugs Marlene
I was told, and have read once you go off Ibrance, you will not be able to get back on it again. I do not know WHY, but that is what happens. If it were me. And I had no side effects from the IBrance, I would take the lowest dose possible. May God continues to bless you and your family
Don’t know if it is helpful but I have consciously chosen to decline ibrance for last year after oophorectomy...am still on letrozole and xgeva/ev 3 mo
Pet in March was really good, onc a bit surprised and gave me option
Declined again because pandemic
6 month pet this morning...so we shall see
I wanted to see how far I could get without it.❤️
Check in with your body. Think about your overall health and if you stop and take a break...is it something you can start again? 🤷♀️
Great news on your scan! I think it was Lynn who said less is better and I agree with that philosophy My scan in December came back with no progression. My tumor marker went up another 10 points to 121. My Onc thinks the cancer might be hiding somewhere. Gave me 3 options. Faslodex shots alone, add Ibrance to Arimidex or Faslodex and Ibrance. I asked about another scan so I’ll have a bone scan in May. Dodged the bullet for another 3 months lol. Onward and upward lol
So far ok but I have my days-my tumor marker started to creep up but I go for lab on the 16th and pet scan in March so we will see. At least I got my vaccines for the Covid..I started up back at the y wca but now turned a little cold down here so taking a break. Hang in there-pfizer approved me for another year which is great! 🙏❤️🌹
Hi. I joined this group for my mom who is 72. She has metastatis to the lungs. They put her on Letrozole and Palbociclib. Ibrance makes her platelets and wbc counts fall ? Did that happen to you too ?
It's hard to know, but a genomic test may help. After chemo in 2016 I was on Letrozol and Ibrance and the cancer came back--turned out I am genetically programmed to be unresponsive to Letrozole. For my type of cancer, a combo of Ibrance and Faslodex seems to do the trick (plus Xgeva, for bones). There are women who just do the Faslodex because they don't like side effects of Ibrane (fatigue, Brillo hair). But statistically, that combo is better. Check around, and a genomic test might help.
I just got to NED (no evidence of disease) on Ibrance and Fulvestrant after 15 months and my Onc says we’ll stay the course until it stops working and there is progression at some point. It is what got me to this point. If you have MBC, even if you are stable (in remission) like me the cancer is still in there waiting to rear it’s ugly head somewhere else. Hopefully that won’t happen for a long time. I would be leary of anyone saying you are “healthy” enough to stop treatment. I would get a second opinion. Best to you in your journey. Lin
I have been on 125 mg Ibrance + 2.5 mg. Letrozole for over seven and a half years. In 2016, I was diagnosed with stage IV breast cancer with diffuse tumors in the lungs. It's now January 2023 and these two meds have kept me stable with no progression! For the record, I am tall and weigh over 300 pounds and eat whatever I want including food containing sugar. It is a myth that sugar feeds cancer. (The confusion springs from people who do not understand PET scans and how rapidly dividing cells use more glucose and "light up" during PET scans. Keep in mind that all food turns into circulating glucose in your blood.) Additionally, if you are overweight when you are diagnosed with breast cancer, actual scientific research shows that you are likely to last longer if you maintain your weight rather than diet and lose weight. It's true. Here is the study:
Lynn, it is wonderful news that you have been on this therapy for more than 7 years!! I have been on Ibrance and Fulvestrant for less than 3 years and I feel good and my scans are clean. However, I would like to know if anyone from this site has stopped taking Ibrance in case when a pet scan is clear and cancer free?
I’m glad you are doing well and your scans are clear ! However, once you are stage 4 you are still at risk of microscopic cells lurking somewhere in your body and reappearing in the future, so unless there is a miraculous new treatment in the future , you should continue on your medication. I have been in a similar situation for the past five years , but my onc keeps me on the meds , but she would consider a lower dose to 100 mg ( I am currently on 125 mg Ibrance / Letrozole) . Wish you continued good scans ! x
Thanks a lot. Yes, once at stage 4, always at stage 4. Still, I believe in miracles and hope that the day will come when a cure for metastasis will be found. Until then, we will use the best treatments available to us. Teddielottie and Lynn, you give us great hope that with this treatment it is possible to live a long and quality life. Thank you for sharing your story with us.
Fabulous that you have been on this combination for 7 years ! Have you always been on 125 mg Ibrance and do you plan to stay on the highest dose ? I have just started my sixth year on this combination , have been stable with so far no known progression, and am wondering if I should consider a drop to 100 mg Ibrance ? My wbc at the end of my four week cycle are around 3.1 and my neutrophils around 1.3 . I am fortunate not to really get side effects from Ibrance now or I tolerate them , but I have had most of them in the first few years of taking Ibrance . And like you , I have gained weight in the last five years ( I blame the Letrozole !) and I also don’t take any additional supplements, don’t follow a special diet and I eat cake !!! Hope you continue to do great ! x
Same here. I have a BMI of 35 and was diagnosed June 2015, had 21 weeks chemo and then Dec 2015 double mastectomy - Stage IV. I eat whatever I want including lots of sugar, and am very fatigued taking Ibrance/Letrozole, so absolutely no exercise. I have now been taking Ibrance since Jan 2016 and still NED (no evidence of disease) My oncologist told me to just keep doing, or not doing whatever I have been as it appears to be working well.
I’ve been on Ibrance and anastrazole as a maintenance for metastatic endometrial cancer for over 5 years. I am in remission. The first 3 years, I was on 125 of Ibrance, then I went down to 100 when my body couldn’t recover during the week off. My dr says the I will stay on the current regimen until I have a recurrence, then he will add another thing.
My drs calls all of this well managed cancer which is in remission for now.
In case you are wondering why I am in this group, it is because I have ER+ and PR+ and HER2 - cancer which is being treated like mbc. For some reason, even though 70% of endometrial cancers are hormone based, most metastatic endometrial patients are not getting the same treatment choices. I was one of the earlier ones. In fact, one of my drs even said that I was a miracle of modern medicine- we think it’s because he didn’t think this regimen would actually work for me. The hematology onc knew it would work because he worked in the clinical trials as a dr of breast cancer patients.
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